Health Update (and soup recipe)

I am currently in the middle of a big flare-up of gastroparesis, which started about two months ago. Prior to this flare, I could eat small amounts of most things, and though I often felt nauseous, bloated and uncomfortable, these symptoms were controllable with medication and other techniques. Currently, I'm not able to eat anything solid, and have just spent a week in hospital, where I had some injections of Botox into the lower opening (pylorus) of my stomach. Normally the pylorus holds the stomach closed until the food has been churned and mixed enough for it to be allowed to continue on its journey through the digestive system. The Botox relaxes this muscle, meaning that the food doesn't get stuck in my stomach, but can just drain through by gravity.

I have been advised to stick to a liquid diet, at least for the next few weeks, until we know how effective the Botox has been.

I've lost quite a lot of weight since the start of this most recent flare, so my Gastro team (especially my wonderful dietician) are keeping a close eye on me.  It doesn't help that I was already deficient in iron, vitamin D and vitamin B12 - that means I don't have the luxury of a 'nutrient store' to keep me going while I'm not able to eat much. My dietician is watching over me like a hawk with the intention of starting tube feeding as soon as it becomes medically necessary. What we don't want is for me to get to a dangerously low weight (with associated nutritional and electrolyte deficiencies) before anything is done. Having said that, I don't really want to be tube fed at all, either through a temporary NJ tube (from my nose, through my broken stomach and into my small intestine) or through a more permanent tube (PEG-J or PEJ) that would go into my small intestine directly through the skin on my abdomen.

I'm not saying that I can't see the advantages of tube feeding - of course I can. It would take away the pressure of constantly pushing myself to eat and drink despite symptoms; it would give me a way of getting enough calories and other nutrients relatively easily; would stop the weight loss. But it also means a surgical procedure (for the PEG or PEG-J), a tube going into my body 24/7, having to carry a pump and feed around with me (at least initially, if I need to run the feeds during the day as well as overnight). And, of course, it means another visible reminder of what this illness is doing to my body.

So, for now, I will continue to eat and drink as much as I possibly can, and will see what happens.

While in hospital, I couldn't help noticing that almost everything offered to me was sweet. Fortisip milkshakes come in a range of sweet flavours (mocha, chocolate, strawberry, forest fruits, vanilla), and the vitamin/protein-enriched juices are much the same. When my blood sugar was low, I was offered Lucozade and glucose tablets. I have found myself desperately craving other flavours - bitter, sour, salty.

The obvious answer to this (apart from drinking gherkin juice and licking salt and vinegar crisps) is soup. Now that I'm home, I have access to real ingredients, and I am looking forward to eating a range of delicious and varied soups. Last night I had roast butternut squash, carrot and coriander soup. Today is hot and sunny, and just screams 'Gazpacho'! I'm not going to argue with that. I love gazpacho anyway, but the thought of it now, after a week of simple, repetetive flavours makes me want to dance with excitement.

People have been kind enough to share their favourite soup recipes with me via Twitter and email, so I'm building up quite a list. From initially feeling a little bit overwhelmed at the thought of eating nothing but soup, I'm now starting to see the possibilities. From silky-smooth leek and potato to the sharp, cold gazpacho, elegant French onion soup, with its dark, caramel undertones and spicy Thai soups, rich with coconut milk and chilli. This doesn't have to be a limited diet!

The recipe that I'm using for my gazpacho is from Sarah Raven's Garden Cookbook. It serves 6-8 people at normal size portions. Obviously, I will be freezing most of mine!

Ingredients:
3-4 thick slices of slightly stale white bread, crusts removed
2 cloves of garlic
Generous drizzle of olive oil
1 1/2 tbsp red wine vinegar
675 g tomatoes
2 sweet red peppers (from a jar, or roasted and skinned)
1 large mild onion
1 small cucumber
425 ml tomato juice
Salt and black pepper
A few fresh chives

Method:
Tear the bread into small pieces and put them into a large bowl.

Crush the garlic and add it to the bread. Add just enough oil for the bread to absorb, and then stir in the vinegar. Skin, deseed and chop the tomatoes.

Chop the peppers and roughly chop or grate the onion. Deseed and chop the cucumber. Add these to the bowl and mix well. Add the tomato juice and season with salt and pepper.

Blitz the whole thing with a stick blender, or put the mixture into a food processor and process until smooth.

Check the seasoning and add iced water to get the consistency you want. Chill and serve very cold, with a few fresh chives chopped over the top to garnish. 

Acute and Chronic

After writing the last entry (about action plans - here if you missed it), I continued to think about what happens when chronic illnesses flare up enough for me to need help. How to identify the acute exacerbations of my chronic conditions and separate them out from the normal fluctuations of the conditions.

Actually, with asthma, it's relatively easy because there's something to measure. I can stagger into my local A&E and tell them (in between gasps) that my peak flow is 100, and everyone will agree that I need to be in hospital.

With other conditions, though, trying to determine when I need emergency help can be like trying to pin a tail on a moving target. For the record, I definitely do not try to pin anything onto my cat, when she is moving, or otherwise.

Soon after my most recent gastroparesis flare started, almost six weeks ago, my GP recommended that I needed to go to hospital for IV fluids and IV antiemetics (anti-sickness medication) because I had only been managing to keep down about 200 ml per day, was feeling dizzy, and was vomiting. About a week later, we had the same again - I was still vomiting, still struggling to keep fluids down, still feeling dizzy, and was only passing water about once in every 24 hour period.

Almost six weeks on, little has changed. I spent all day yesterday lying absolutely flat in bed because I was so dizzy and nauseous, only getting out of bed to vomit. Today is much the same, though I'm horizontal on the sofa for a bit of variety.

My gut feeling is that I need to go to A&E for a top-up of IV fluids and some antiemetics, but there's no objective measure to which I can point to say why today; why now.

I feel constant, severe nausea, but I felt that yesterday and the day before. I have been nauseous, to some degree, for several years. Why is today different?

I have struggled to take in more than a few hundred calories (most of which I vomit back up) and feel very dehydrated. But I've averaged 500 kcals per day for almost six weeks now. What's so special about today?

My blood pressure is low and my heart rate is high, making me weak, shaky and dizzy - that delicious combination of autonomic dysfunction and dehydration. But I was dehydrated yesterday. There is no measure of dehydration that can tell me why today is the day that I think I need help.

I could wait until tomorrow, but even tomorrow there will still be no standard; no bar below which I might fall, telling me that I must go to hospital. My symptoms tomorrow will probably be the same as my symptoms today, and my uncertainties will be the same.

I picture myself on arrival at the hospital:

Nurse: And how long have you been feeling like this?
Me: About six weeks
Nurse: And why have you come to us today?

That's the question I can't answer. Yes, things are bad; they're worse than yesterday and the day before, but could I continue at home? Yes, I probably could. Would I feel better after some fluids and medication? Yes, but I managed without them yesterday and the day before. It's like playing a giant game of chicken with my health.

I wish that there could be a measurement that would indicate exactly what my body needs. Like a petrol gauge on a car. I feel as though I'm currently running on vapour, but I have no way to check. At a better, calmer time, I need to discuss with my GP and dietician and come up with an action plan, similar to the one that I have for asthma, so that I know, without doubt, when I am safe to continue to cope at home, and when I need help from the professionals. Oh, and we need to come up with a better long-term management plan so that my gastroparesis is better controlled and I don't keep returning to this situation of 'firefighting' the acute problems.

Presently, in the absence of better measurements, I turn to social factors. Do I have important hospital appointments that I need to attend? Do we have plans to see friends or family? Is there anything really important that I need to do in the next 24-48 hours? Can I get to the hospital? Is it raining? Would it be easier to wait until tomorrow?

Applying this to today, I'm supposed to be celebrating my birthday tonight (with Richard) and tomorrow (with my family). As unwell as I am feeling now, I would rather be in an uncomfortable bed in hospital receiving IV fluids and IV antiemetics, surrounded by noisy, drunk and disruptive patients than struggling to stay upright and awake, and not vomit while 'celebrating' with friends and family. That a hospital visit sounds more appealing than birthday cake is enough to tell me that it's probably time for that trip to the hospital.

Taxi!

When Even Liquids are a Struggle: Some Advice

Gastroparesis is a condition in which the muscles or nerves of the stomach don't work correctly so the stomach isn't able to empty effectively. Food stays in the stomach for hours longer than it should, causing nausea, bloating, fullness and pain, as well as vomiting.

Because the stomach doesn't empty properly, eating and drinking can be a battle to fight through all the symptoms. Failure to eat or drink enough can cause severe malnutrition and/or dehydration.

One of the easiest things to do when gastroparesis symptoms are severe is to stick to a liquid diet. Liquids empty from the stomach by gravity, so in theory they should cause fewer symptoms than solids. However, even liquids can cause symptoms, so here are a few tips as to how you can maximise nutrition when even liquids are a struggle.

• Maximise your nutrition and hydration - make every morsel count. Now is not the time for diet drinks.
• Take care of your teeth - chew sugar-free gum to hydrate your mouth and don't brush your teeth within 20 minutes of vomiting. Yes, this feels disgusting, but the acid in vomit softens the tooth enamel, and if you brush too soon, you'll remove precious enamel from your teeth. Rinse your mouth with water immediately, and then brush later.
• Take your anti-emetics (anti-sickness drinks) on a regular schedule. If you can keep the nausea and vomiting at bay, you have a better chance of staying hydrated
• If swallowing is a problem, or if you don't absorb tablets/capsules well, speak to your GP or pharmacist about alternative preparations. Many anti-sickness medications are available as tablets that dissolve in the mouth, or even as a patch that can be stuck on the skin. Other medications may be available as liquids or soluble tablets (or other forms), and capsules can sometimes be opened and the tiny beads inside can be swallowed with a spoon of yoghurt or apple sauce.
• Get help for pain, whether it is in your mouth, throat, stomach, or somewhere else. Bonjela (a gel for teething pain or mouth ulcers) is available over the counter. Don't be afraid to speak to your GP or pharmacist about pain, especially if it's stopping you from eating or drinking. 
• Painkillers are better at keeping pain at bay than they are at getting pain under control once it's really established itself. If you've been prescribed painkillers to take regularly, do take them regularly.
• If you've been prescribed NSAIDs (e.g. Aspirin, Ibuprofen, Naproxen, Diclofenac) and find that they are upsetting your stomach, ask your GP or pharmacist if they can recommend an alternative, or if they really are the best medications for you, to prescribe other medication to protect your stomach while you're taking the NSAIDs.
• Be careful of low blood sugars (hypoglycaemia). Symptoms of hypoglycaemia include anxiety, nausea, sweating, hunger, shakiness and weakness. If you find it difficult to spot the symptoms of low blood sugars before they get so low that you collapse in a heap, ask your GP about monitoring your own blood sugars at home, and make sure you get instructions about when you should check your sugars, how low is too low, and what you should do in this situation.
• Taking a supplement of multivitamins/minerals can minimise some of the anxiety associated with not being able to eat. If you know that your micronutrient needs are being met, you can focus on getting hydration and calories. I recommend trying to find supplements in liquid or chewable form, as these are often better tolerated than capsules or tablets. Those designed for children can be more palatable. If you can't tolerate the whole dose, or can't tolerate it every day, don't give up. A little is better than nothing!

So what can you eat/drink?

• Water is great, but if you're barely managing liquids, your body may need more than just water - try clear liquids, e.g. apple juice, cranberry juice, bouillon, sugary cordials. It's also possible to buy fortified juices, such as Fortijuice, which are clear liquids, but are fortified with extra nutrients and calories.
• Dioralyte (or another rehydration solution) is brilliant if you can tolerate it, as it contains electrolytes and sugars to help replenish what you're losing, especially if you're vomiting or if you have diarrhoea.
• Try setting a timer - every 15 minutes drink a teaspoon full of liquid. This seems like a tiny amount, but if you can tolerate it, you'll be getting 20 ml per hour, or 100 ml every five hours. It all adds up. If you can manage that, try increasing the frequency to every 10 minutes, or the volume to 2 tsp (10 ml).
• Carry a bottle of juice around with you and take a sip every time you remember. 
• Using a straw can make it easier to drink quantities, especially if you have a sore mouth.
• Very plain salty crackers, e.g. saltines or water biscuits can help settle the stomach
• Ice lollies (popsicles) are a great way to get those valuable liquids. They are available in minature forms for children, but if even these are too large, try making ice cubes from fruit juice or cordials.
• Ginger is renowned for its anti-nausea properties. A delicious tea can be made from grated ginger, honey and hot water. Strain before drinking.
• Boiled sweets (hard candy) are a good source of sugar. If you can suck these in addition to your liquid diet, they provide calories, flavour and a bit of variety from an entirely liquid diet. 
• Get yourself some dextrose tablets to have on hand in case of low blood sugars - you can suck them or rub them against your gums. If you prefer, you can get sugary gel from your pharmacist that has the same effect (try Hypofit or Dextrogel).

If your fluid intake falls below about 200 ml per day for more than a few days, or you find that you're only able to wee once in every 24 hours (or even less), it's time to stop struggling at home, and get some medical help. Being very dehydrated is bad in lots of ways, but in particular can cause damage to your kidneys. It can also make nausea and vomiting worse. It might be time to get some IV fluids in hospital to top you up until the flare is over. If the flare goes on for a long time, it might be time to consider more long term options, which you can discuss with your doctor.

Because gastroparesis is not very well recognised, there's not a lot of literature available. One author that I can wholeheartedly recommend is Crystal Saltrelli, who is a certified health counsellor in the US. She has gastroparesis, so is writing from personal, as well as professional, experience.

Website: livingwithgastroparesis.com
Books: Living (well!) with Gastroparesis
            Eating for Gastroparesis: Guidelines, Tips & Recipes

I'd love to hear from you about any other websites or books that you recommend, or any tips that you find helpful when eating and drinking are a struggle.